Fundraiser for autism awareness is personal for Michigan football's Harbaugh family
Jacob Harbaugh eats the same meal for dinner every evening and has for two years: peanut butter (smooth) on two slices of whole grain bread — and water.
Shortly after, his parents take him upstairs to get ready for bed at precisely 6:30. It’s always the same: get into pajamas, right foot first, brush hair, brush teeth.
He wakes at 7:20 a.m., without an alarm clock, though his mother, Brhitney Harbaugh, is convinced her 3-year-old son has one inside him. Routine is security.
Once a week, sometimes twice, she puts Jacob — and her sister Norma; she just turned 2 — in their car and they drive through a car wash. Jacob loves the car wash, the sound of the spray, the whirring bristles, the kaleidoscope of blue and purple and green that pulsate through the dark.
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Lately, he has taken to pressing his hand against the window to try to touch the spinning bristles. It makes him smile.
Brhitney bought a membership to the car wash for the same reason another parent might pay little league fees, because Jacob may never play baseball, or football, the sport his father, Jay Harbaugh, coaches at Michigan football, alongside his father, Jim Harbaugh.
But then you never know. Not that long ago, Jacob’s parents weren’t sure when he would walk. And they’re not sure when he will speak.
“The day he calls me ‘mom’ will be the greatest day in the world,” said Brhitney.
Autism has its own harsh timetable that way. It also has its own vast spectrum.
Jacob’s diagnosis is on the severe end and, even now, a year and a half after doctors finally confirmed Brhitney’s suspicion, no one is sure what this means for him. The goal, therefore, is simple: “Happiness,” says Brhitney, “everything else … it really doesn’t matter.”
Though they hope. That one day he will turn around and look at them when they call his name. That he will be able to point to what he wants to eat for lunch. That he will be able to tell them what he wants to eat. That he will be able to feed himself that peanut butter sandwich.
Xavier DeGroat gives them hope.
Hope that relentless therapy — behavioral, occupational, speech, physical — will propel their little Jacob to eventually find his purpose, the way DeGroat found his.
The 31-year-old Lansing resident is behind the Xavier DeGroat Foundation. This Wednesday, his organization, with the help of Jim Harbaugh and the Michigan football program, will host a fundraiser to raise awareness for autism and to raise funds for a “sensory” room in U-M's health system.
The kind of room DeGroat would’ve benefited from when he was little, as he navigated the world with autism. A room with a fish tank, with toys designed to teach and to soothe, with colors and sounds that ease the outside world’s chaos.
“For when kids wait for doctors or therapists,” DeGroat said.
He has been in contact with the hospital’s administration and its budget director, and his goal is to raise $100,000 to pay for it. Already, he’s raised $15,000 for a small sensory room at Detroit Metro Airport, where Delta Airlines and the folks who run the McNamara Terminal joined forces with him to build.
Another fundraiser is scheduled for later this summer in Detroit. Former Lions great Billy Sims will be there. DeGroat is reaching out to Barry Sanders.
“I love sports,” DeGroat said. “It offers everything and helps me network.”
He grew up a Wolverine fan in Lansing, mostly because his dad loved U-M and used to say to him: “Let’s get in the car and go see Lloyd Carr.”
That phrase stuck with him. It challenged him.
“People with autism struggle with the gray areas of language, with comedy, with sarcasm,” he said.
His father sent him to therapists as a young teen, primarily to learn how to distinguish tone and inflection and meaning in words. His diagnosis wasn’t as severe as Jacob’s, but he struggled to communicate, too.
Speech therapy made a difference. So did his father’s gentle push to socialize. Comedian George Lopez helped him understand humor.
“Listening to (him) taught me a lot,” he said. “You have to learn not to take everything literally.”
If DeGroat hadn’t learned that, he would not have had the confidence to start his foundation, to network, to reach out to former Michigan State football coach Mark Dantonio, who pushed him to keep reaching.
He did, all the way to the White House, where he interned a few years ago.
“I’ve met all five presidents who are living,” he said.
He is pals with golfer Ernie Els, whose son is autistic. He knows Tom Izzo and now Jim Harbaugh, and his father, Jack, whom he met 2½ years ago in the atrium of Schembechler Hall when he pitched the idea for Wednesday’s fundraiser — former Ford CEO and U-M athletic director Jim Hackett set up the meeting.
“Xavier blew us away,” Jack said. “He talked about the difference his father had made in his life and how if families recognize the signs and get their kids diagnosed and help by the age of 2, it can make a real difference in their life. We really didn’t understand much about autism. But the resources matter. Jim wanted to help right away.”
The first fundraiser was set for May 2020. Then COVID-19 hit; Wednesday night at the Michigan Union is almost three years in the making, or more than a year before Jacob’s diagnosis.
“This project started with us being interested in a story, in someone that had it,” Jack said, speaking of the day DeGroat stopped by Schembechler Hall. “Then it became personal.”
Jack and Jim and Brhitney and Jay learned quickly that it’s one thing for a parent to get their child diagnosed, and another thing to get them help. The Harbaughs had resources. They couldn’t help but think about others who didn’t.
Jacob spends almost eight hours a day in behavioral therapy, every day. It costs $50 an hour. He also receives occupational therapy once a week. That costs $75 per session. Then there is physical therapy and speech therapy, each has its co-pay.
Good insurance may pay for the bulk and the Harbaughs are able to cover the rest, but not everyone can. Nor does everyone have insurance.
Without therapy, many autistic children don’t have much chance to develop.
Jacob, for example, is learning to recognize things through pictures, like what a banana is. The hope is that words will come. Until they do, therapists will keep teaching him cues. And teaching him to build motor skills, which is why he spends so much time stacking blocks and slipping coins into a piggy bank.
“That was a big one,” said Brhitney. “We wouldn’t (have) thought of that. We are not professionals. We needed help.”
If an autistic child isn’t taught the things neurotypical children learn on their own, they may never learn them, and the most crucial period for learning begins around 2.
“The earlier you get help, the more chance (your child) has a chance at normalcy,” said Brhitney. “Some families never get the chance to get that help.”
She and Jay wanted to help spread the word about the resource disparities among families with children on the spectrum. Even with financial comfort, day-to-day life is a challenge.
Jacob doesn’t like his face or ears touched. He startles easily. He has no sense of what’s dangerous. Norma, his 2-year-old sister, has taken to holding his hand while they walk, to protect him.
He is cautious about human contact in general and can be slow to trust. This was especially hard for Jay, because he would have stretches of the season where he worked long football hours coaching or would travel for a week at a time recruiting, and when he would return Jacob kept his distance.
Jacob wouldn’t hug him. Not for the first couple of years. But COVID hit. He was home more. Recruiting was done over Zoom. And by the time the world opened up, Jay had been able to connect in a different way.
About six months ago, he came home one night from Schembechler Hall. Jacob hugged him. Jay broke down.
“It's hard to put in words,” Jay said of the moment. “It was kind of overwhelming, a flood of emotion, because you have this desire to have a fantastic connection with your child. The love from me never wavers, of course. But sometimes it’s difficult if you don’t get to see or feel (their love for you) in the way a typical child might show.”
Not having the affection reciprocated is part of raising a child like Jacob. So, you reframe your view and your expectation, and the smallest thing reveals the largest meaning, like the first time your son hugs you.
Or the first time he smiles when the toy turtle projects a pattern of light on the ceiling in a darkened bedroom. Or the first time he jumps on a trampoline, three weeks after he couldn’t jump at all. Or the first time he laughs, almost three years after he was supposed to start. Or the first time he rides through a car wash and his eyes widen with wonder.
“You redefine things when you have a child that is different,” Jay said. “To someone else a hug (or a laugh) might not look like much. But for me it could just be an extended period of eye contact (from Jacob), sharing that moment of connection, when you feel like you can see them, and they see you.”
This is where he and Brhitney and Jim and Jack live, in search of moments of joy. This is now their mission, like DeGroat’s, a man who is showing them and so many others what is possible.
For Jacob and for DeGroat and for tens of thousands who face similar challenges, routine matters, therapy matters, calm matters. Awareness matters, too.
Jay is grateful for his work and appreciative of the privilege to live the coaching life and to enjoy the resources that go with it. He and Brhitney want to help other families who aren’t as fortunate.
“You enter into a community like this kind of by surprise,” he said. “It opens your eyes to things families are going through.”
Follow Shawn Windsor on Twitter @shawnwindsor.